Looking to see if anyone else has similar issues.
Initially had 2 operations, then have been on a blinded clinical trial so won’t know which drug/ combination I have received. Treatment stopped after 5 months out of the planned 12, due to side effects of; pneumonitis, pneumonia, deranged thyroid function & colitis, to name a few.
Pneumonitis & colitis responded to intravenous steroids & then reducing high dose steroids but every few weeks flares up & we start the steroid cycle again. Now awaiting infliximab infusions.
Anyone else experience similar, does anyone ever get off steroids, now needing to monitor blood sugars & getting cramp in hands & feet. I accept that these treatments are not without risk & would still have proceeded as Little else available.
thanks
Hi Gilly99
I don't have any experience to share with you but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
